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Author
Topic: Survival (Read 5377 times)

I think there are as many ways to survive HIV as there are people with HIV. Its not right to generalize about HIV treatment in ways that are misleading or confusing to the newly diagnosed. A common question is: "How long will I live with HIV?" Well, as long as you can! But people want concrete numbers like 20 years or something. Another common question is: "How long can I go without taking HIV drugs?" Well, as long as your CD4 counts are normal and viral load is near or undectible. Could be 2 years 10 years or 20 years. Like Ann said, if you are a long term non progressor, for a loooong time. I waited 24 years for the shoe to drop. It finally did this year. I am now taking a new HIV drug called STRIBILD. Once a day pill. But how lucky was I that I never had to take those awful drugs like DDI or AZT. !!! Very lucky.Hey, it is what it is.Never become complacent about your health, check bloodwork regularly.

You know bear, with people like you and me after so many years, research really should be done on "why the shoe drops" after such a long period of time. It might be of benefit and prevent others from being clobbered over the head!

'Surviving' seems a really uninspiring goal but I'm having fun 'living with' HIV. Maybe one day I'll evict the defacto (that pesky virus hasn't been paying any rent or utilities).I'm far more focussed on living well with HIV than living long with HIV.

I have know guys in my state of Missouri to die of AIDS in 5 years ! This is here and now , Not back when the doctors were killing people with AZT ! I have no idea why some people can go a L O O O O N G time and other the virus eats them up .

I was fortunate enough to work until I was over 50 , Being POZ from about 1981 was not a good thing , But I survived it until the good MEDS came ! My friend Dale went 19 years , monitored every month . Two years on MEDS and He is DEAD ! The drugs ate him up

I feel sorry for the guys that think we are OK because we have lasted over thirty years with HIV ! Having AIDS is not fun thing for me . I would give up everything to be " NORMAL " again !

I was one of the unfortunate ones who went from being positive to having AIDS relatively quickly. Dying or AZT was a tough decision. I had several friends who chose death over that awful drug. Some how I clung to the belief that something better would come along.

I was one of the unfortunate ones who went from being positive to having AIDS relatively quickly. Dying or AZT was a tough decision. I had several friends who chose death over that awful drug. Some how I clung to the belief that something better would come along.

I should have bought stock in Haines back then.

Dying or AZT...that was pretty much the outlook given to me in 1989. I was extremely fortunate to learn my HIV status through a routine test for life insurance (hah!) so was able to take action while I was healthy rather than be blindsided by illness. My CD4s were 330 which was a serious concern; we didn't have VL or other detailed labs at the time. I was in the SF Bay Area so had access to some of the most knowledgable folks in the biz. AZT came along later that year so I of course grabbed at whatever I could when advised.

Now having been through the wringer(s) of being treatment experienced, failing regimen after regimen because of drug resistance, do I wish I hadn't started early? Maybe. Who knows? Am I thankful that what drugs I did leapfrog to over time kept me here and healthy? Yeah, I'm pretty sure they deserve some credit.

And yeah I know all about the harshness of the earlier drugs. I remember driving to work and puking my guts out after my morning AZT (over)dose. Anyone remember Darunavir? If not, you're lucky; that was a big misfire. And the lipodystrophy side effects from other meds could be as debilitating, physically and mentally, as HIV itself.

So I want to give credit for anyone who can stay clinically healthy and be off meds. More power to you for being able to avoid pouring chemicals into your body. But let's not do the 20:20 hindsight thing about past meds. It got us here -- well, not all of us but many of us -- where we are today: alive for second and third chances at life. If we really want to save people from taking meds, let's get word out to get tested early and monitor often.

I know there's a pretty large crowd that reckon's AZT was an invention of the devil, but it sure as hell gave my immune system a good boost for 6 months, then there was the DDI boost, the 3tc, the ddc..... it all added up to me surviving just long enough for those protease inhibitors. The rest is history.

There is some back story to AZT being relatively successful in Australia, the initial trials of the high dose AZT got taken over by our local Treatments Action Groups. All AZT and the placebo capsules were thrown into a bucket. So on average all trial participants were getting half dose AZT rather than high dose vs contol wings.

89 was the year of my AIDS. Really sucked to only have those 2 choices, neither of which was good. Positive at 21, and AIDS at 24 seems surreal now. Not sure if there's something wrong with me or if it's common as I think about a few of my closest friends on a regular basis.

Obviously, Bill had my heart, but the other Gregg had another special part. Best friends since 5 years old and watching him die a horrid death has somewhat jaded me. I try not to think of him too often, but I do several times per day. He was the antithesis of me which I think forged the greatest lifelong bond.

At least I know he'd appreciate my dark humor when I say that at least he got to die with a full head of hair and not face middle age. He and many others will forever remain young in my memory.

AZT....6 pills every 4 hours around the clock. Lead to anemia. Besides other problems we were all familiar with.

I remember my friends the way they were also. I'll never forget the first friend I had that passed from complications. He sold his life insurance policy and bought a Winnebago, and traveled. He also spent lavishly on his friends. Such a beautiful soul. I'll never forget any of my friends who passed, but the first one kind of holds a special place.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I know there's a pretty large crowd that reckon's AZT was an invention of the devil, but it sure as hell gave my immune system a good boost for 6 months, then there was the DDI boost, the 3tc, the ddc..... it all added up to me surviving just long enough for those protease inhibitors. The rest is history.

There is some back story to AZT being relatively successful in Australia, the initial trials of the high dose AZT got taken over by our local Treatments Action Groups. All AZT and the placebo capsules were thrown into a bucket. So on average all trial participants were getting half dose AZT rather than high dose vs contol wings.

@bearI'm glad one of us still has vices.

I'm not sure if AZT was made by the devil, but I know for sure that liquid Norvir was the spawn of Satan. It tasted like gasoline/kerosene/heavy crude oil and the only thing that got that awful taste out of my mouth were Rolo's.

I'm not sure if AZT was made by the devil, but I know for sure that liquid Norvir was the spawn of Satan. It tasted like gasoline/kerosene/heavy crude oil and the only thing that got that awful taste out of my mouth were Rolo's.

Joe

Oh man, that's the truth. BLECH! I took the liquid with me on a trip after being advised that the capsules needed refrigeration but the liquid didn't. Way to kill a vacation. Except yeah, the bright spot was chocolate was the antidote!

My nightmare combo was mid nineties with saquinavir, ritonavir & d4t. Massive doses of the trots for about 5 hours per day and complete loss of sensation in my legs & feet which made the stairs to my apartment a lottery as to falls.

The photos of me from that era are scarey... looking like a survivor from Belsen or Dachau.

And these days I just trot along to my physio, do my gym work and swimming and cycling. Oddly enough I have roughly the same no of cd4 cells as i did back then (70 now vs 60 in the latter half of the 1990s) but the health differences are gigantic. Being off the drugs, off the cigarettes and with alcohol only very occasionally helps with the health too. Fitter than ever I was in my youth.

And these days I just trot along to my physio, do my gym work and swimming and cycling. Oddly enough I have roughly the same no of cd4 cells as i did back then (70 now vs 60 in the latter half of the 1990s) but the health differences are gigantic. Being off the drugs, off the cigarettes and with alcohol only very occasionally helps with the health too. Fitter than ever I was in my youth.

My nightmare combo was mid nineties with saquinavir, ritonavir & d4t. Massive doses of the trots for about 5 hours per day and complete loss of sensation in my legs & feet which made the stairs to my apartment a lottery as to falls.

The photos of me from that era are scarey... looking like a survivor from Belsen or Dachau. . . .

Holy Cow!, I forgot about Saquinavir. I was only on it for two months, but it made Criix a breeze!. If memory serves, my doctor had me taking it with an 8 ounce glass of grapefruit juice and a full-fat meal. Boy, was I sick from that stuff.